My Wifes 1st treatment soon

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Brian82
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/14/2009 7:44 PM (GMT -6)   
My wife was just diagnosed with RRMS about a week ago and her docter has prescribed her Copaxone daily shots and I don't know who is more scared, her or me. I have been doing some serious research and it seems that there is no definite answer as to how it will effect her. Some have horror stories while some have no problems at all. I know everyone reacts differently, but I guess we're scared. On top of the diagnosis, now we have to worry if the meds will do more harm. Any help or advice or anything would be appreciated.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 4/14/2009 10:02 PM (GMT -6)   

Hi Brian,

I am sorry to hear of your wife's recent diagnosis.  I have been on copaxone for two years now.  I have not had any problems.  We have had some here that have had problems with it.  I have not heard of any permanent problems.  All poor reactions stopped when the med was stopped.  I hope that sets your mind at ease some.  We have one member that had a ton of IPIRs.  IPIR is "immediate post injection reaction".  This feels awful but according to doctors and pharmacists, it is not serious.  IPIRs occurr with in seconds of a shot.  You have flushing and chest pressure.  It feels like an anxiety attack or even a heart attack. I have had this.  I knew that I might have this sort of reaction so the first time it happened I was not scared.  I was uncomfortable!!!  For me it lasted about twenty minutes.  I felt hot and flushed.  I had chest pressure like someone was sitting on my chest.  I just sat calmly and tried to relax myself through it.  I have had a small handful of these reactions.  The one member that had many long IPIRs (hers lasted over an hour) stopped using copaxone. 

We had another member that developed a severe skin rash.  She had large raised hives all over.  She also discontinued copaxone.  Those are the only real problems I have heard about.  Most people tolerate copaxone very well.  I know some that have NEVER had an IPIR.  It is considered the current med with the least side effects. 

Copaxone does leave you a bit lumpy.  They will teach you to rotate your shot sites.  Those lumps feel like a grape under your skin.  The lump might be sore and or itchy the next day.  Some people say if you ice the site following the lump it can help.  I have always been too lazy.  I just ignore it.  The lumps do go away but they take time.  There is a rare side effect that results in a small depression in the skin.  It is where the fatty layer under the skin is destroyed.  It leaves a bit of a crater where the skin sinks into that spot.  I have personally known of no one with that reaction. 

The needle itself is not painful.  The needle is sharp, short and fine.  The copaxone stings.  Your wife will feel it after about two minutes.  The first couple of shots are sort of nerve racking.  Then you get used to it.  I don't even think about it now.  It only took a few days to get used to it. Again, icing can help.

Please post as many questions as you need.  We are here to help.  We have all been in your shoes.  We hope you stay and let us get to know you.  This is a wonderful board with many very nice, supportive people.   


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 4/14/2009 10:05 PM (GMT -6)   
Oh I forgot to tell you.  Your wife will have a choice as to whether she wants to use an "auto-injector" or do the shots manually.  There is no real benefit medically.  It is personal preference.  If you or your wife is afraid of needles then the auto-inject is the way to go.  The auto-inject is a small device that you put the syringe into and when you ready you just push a button and the shot is done for you.  You don't have to look at a needle once you have loaded it.  I manually inject.  Most people learn both methods so you can choose for yourself. 

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 4/15/2009 10:29 AM (GMT -6)   
Brian
It is a common thing to be scared when first diagnosed with this awful medical condition but just remember that she will need all the support that you can give her. Copaxone is a lot better than Avonex because Copaxone, even though it is an everday occurrence, goes into the skin and Avonex goes into the muscle which hurts like heck.

Also, a lot depends on how far along she already was before she was diagnosed and if the doctor caught it soon enough she should be just fine, almost like normal even except for the everday treatment of the shots. I was diagnosed in June of 2006 and my Neurologist told me that he really can't tell me how far along I was but he did tell me that I had had MS for a few years. He started out by diagnosing me with Relapsing/Remitting but in May of 2007 he re-diagnosed me with having Primary Progressive MS because he said that nothing he was giving me seemed to help control it. I seemed to be getting worse everday but Thank God I have a wonderful wife who gives me all the support in the World and that, my friend, means so much to me.
Please hang in there and remember that your wife needs you and your support now more than ever! Tell her not to worry, things will be OK. Good luck to you and your wife my friend.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Just recently had Treatments of Cytoxin
                                        Liked to kicked my butt!


Brian82
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/15/2009 11:04 AM (GMT -6)   

Thanks Guys.

For how far along she is, we are not certain. She started having symptoms around 8 to 9 months ago. She only had 1 abnormality in her MRI. 1 lesion in the gray matter. But, the nurse is supposed to be coming to the house soon and showing her how to administer the shot. The autoject was already sent and it seems rather unimtimidating. I just hope that the medicine helps. She has felt sick for almost 10 months now and she has pain down her side and numbness in her toes. I have also been looking up low dose nax -somthing or other. I can't remember the name right now but it seems to have positive results. I dunno. Thanks for the support and info. It means more than ya know.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 4/15/2009 11:51 AM (GMT -6)   
Brian,
Just make sure she doesn't set the "autoinject" so it goes too deep, I did that once and let me tell you, it was the last time I did it because "ouch" that hurt so bad as it went into my leg muscle instead of into the skin. I'm sure the nurse will tell you thast anyway. Good luck.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Just recently had Treatments of Cytoxin
                                        Liked to kicked my butt!


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 4/15/2009 11:54 AM (GMT -6)   
Brian,
She will probably feel a little sick the first few times she injects herself but again, that's normal. She may want to start injections just before bedtime so she goes right to bed and goes to sleep.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Just recently had Treatments of Cytoxin
                                        Liked to kicked my butt!


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 4/19/2009 11:14 AM (GMT -6)   
Hi Bohuck, read your post.  I hear what you are saying, but for me this does not work so well.  Most people will not feel sick at all after injecting with Copaxone.  This is the beauty of this drug therapy over other therapies that are avaiable.
 
Taking the shot right before going to bed might not work as well as you suggest.  If the shot goes well, then to sleep u go. However if u take a shot right before bed, and happen to hit a muscle, then you are going to have quite a sore arm for the next few hours.   I take my shot a couple of hours before bedtime just in case something like this happen.  This allows me to do a couple of things to help settle down the site injection pain before going to bed
 
  • pain killer
  • shower
  • warm or cold compresses at the injection site
  • applying lotions
  • massaging the injection site
  • whine (kidding)

As those of who know are on Copaxone and have hit a muscle, you know how much it aches. Going to bed with that ache, well, good luck on a good nites sleep....

Gary


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 4/19/2009 12:46 PM (GMT -6)   

Brian,

There are no side effects to copaxone other than local.  Please disregard the post saying that your wife will feel sick after injecting.  There is a TINY chance of an IPIR (ask the nurse to explain), but copaxone is not like the interferons where you experience flu like symptoms after injecting. 

Here is a link to the low dose naltrexone.  Some find that it relieves symptoms but it has not been proven effective despite being used "off label" for at least twenty years. So you might see it help with symptom management but it is not considered a treatment.  You cannot use it with any sort of narcotic pain relief.  You can use it with copaxone.  Just make sure your wife is not taking anything for pain if she takes the LDN.  This website is good for info.......but is very one sided.  It is very pro LDN. 

http://www.lowdosenaltrexone.org/


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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